Love in the Time of Chronic Illness

I wanted to let you know about the reissue of my book under the new title: Love in the Time of Chronic Illness: How to Fight the Sickness Not Each Other. 

The book is a deep and practical guide that helps couples, and any patient/caregiver partners, stay connected and grow even stronger as they cope with the powerful effects of illness or trauma.

If this experience touches you or someone you know, I encourage you to pre-order this book on Amazon, in either Kindle or print versions.  While the book will officially be available on June 12, pre-ordering now will help boost the book's visibility.

Love in the Time of Chronic Illness has many stories from couples who share the lessons they learned about living with illness or trauma:

• Frank and Linda, whose stroke caused them to rebalance their relationship in new ways
• Abe who, after being Betty's primary caregiver for 30 years as multiple sclerosis stole more and more of her abilities, decided that he had to bring joy back into his life
• Francis and Ted, who discovered levels of intimacy and authentic communication they believe would not have been possible without the intrusion of her chronic pain condition
• Robin and Chuck, who used "active coping" to stay as close to "normal" as possible during his battle with cancer 

You'll also read the advice of a range of experts who offer many strategies for coping - emotionally and practically.  This new edition has an additional chapter for health care providers and health care organizations. Finally, strangely, for a book about such a serious subject, it's a good read.

So, if you know anyone going through this experience, or if you just want to help launch this important book, please pre-order the book on Amazon. If you like the book, I would greatly appreciate your writing a positive Amazon review. Here are some reviews that were written about the earlier version of this book.

Thank you for for anything you can do to help get the word out about Love in the Time of Chronic Illness.  The experience touches so many of us, and this book can really help.  If you can, please forward this email, and post on Facebook and Twitter. 

Who is the Patient and Who is the Caregiver?

I just read (another) story, this time in the Boston Globe, about a couple falling in love, starting down the path toward a rosy future, then finding the lump.  You know the lump I mean.  It can be cancer, multiple sclerosis, a traumatic brain injury, Alzheimer's, a stroke, pain.  Anything can qualify as a lump as long as it's a serious health condition that derails that rosy, idealized future.  An unassailable breach between what was and what will be.  A one way ticket to what Susan Sontag called "the kingdom of the sick."

In this story, he stuck by her side as they tried to achieve normal for as long as possible.  It wasn't too long a journey.  And that is both a blessing and a curse.  A blessing because they could love and hold onto each other without suffering the exhaustion and dullness long term care forces on patient and caregiver.  A curse, because they lost too quickly the future they never were going to have a chance to have,  and the loving kindness they really did have.

One line in the article struck me hard:
"Those outside of relationships in which a serious illness is present sometimes want a simple story:  the patient and the saint."

I think we need to redefine these terms.  Is the patient the person in whose body the illness resides?  Or is the patient the relationship itself which gets unravelled and requires continuous monitoring and re-ravelling?  Or is the caregiver also a patient, someone who is an equal-but-different victim of the invading disease?  And doesn't each partner, to the extent he/she can, try to provide some caregiving to the other?  Even it it's in the form of a smile or an expression of gratitude.  We need to remember that while the disease lives in one person's body, it is two lives that get disrupted, and two whole beings who suffer.

The patient suffers a terrible identity loss, along with the pain and physical demands of the illness.  The caregiver suffers an existential loss (that is, her existence as she knew it is gone), along with a level of physical and emotional depletion no one on the outside can imagine.  The caregiver also suffers the additional anguish of being unable to make the patient well again.  I've lived in both shoes, and I can tell you, I'd rather be the patient.

So, let's not make it easy for outsiders who want that simple story of patient and saint.  When they ask, "How are you doing?"  Tell them the truth.  Tell them that this is not the life you expected.  That it is harder than words can express.  That sometimes you wish the final curtain would drop already. That other times you feel such love and intimacy with your partner -- a level of connectedness that would not have been achieved had it not been for the pressure of the illness.  And then thank them for their concern.

To Be (Intimate) or Not to Be (Intimate)

As Hamlet said about a quarter of the way into his famous soliloquy"  "...'tis a consummation devoutly to be wish'd..."

Hamlet was talking about death.  That's not the consummation I have on my mind.  I am thinking about physical intimacy with one's partner.  Many couples think that the switch that controls intimacy lives in the genitals and is binary - either on or off, either intercourse or watching a late night TV comedy show.

That switch actually lives in the brain, with hundreds of thousands of outposts permeating the skin.  The brain is the key sexual organ.  It takes its cues from the body, but ultimately the brain decides how much physical contact it wants and when it wants it.

For many couples living with illness, sexual intimacy is problematic.  They physicality of the act may not be possible, may cause pain, or may require activity that is just not on a radar screen already overflowing with medications, side effects, exhaustion, and anxiety.

However, sex is also a bridge.  A way of bypassing practical and emotional turbulence and surrendering to the flow of the physical.  An escape.  A way of connecting and feeling greater than you are separately - beyond the reach of what Hamlet calls the "mortal coil."  Indeed, a consummation devoutly to be wish'd.

So what do you do when illness interferes with physical intimacy, but the yearning for the passion and liberation of sexual connection is still active.  

Of course you wonder -- how can couples be intimate without touching?  The solution lies in using the brain as the sexual organ it is.

Your brain can make anything into something else.  Just close your eyes and imagine a perfect lemon. See the textured skin and the bright yellow color.  Smell the fresh lemony fragrance.  Now imagine biting into it.  Most people, as they imagine the bite, pucker their mouths at the imagined tart flavor.  If we can do all this by putting our minds to a lemon, think what we can do if we just imagine playing sensually with our partner and a sponge or a pile of clean laundry.

Both partners, through the words they use with each other and the sensuousness they can bring to everyday activities, can use their brain to create the feeling of the bedroom anywhere, any time.

Here are some ideas:

1)  You can really look at each other.  You can spend more than .05 seconds glancing at each other's face.  Linger on the the face.  Notice the contours, the textures.  Imagine you are touching through eye contact.  This can be a powerful catalyst to intimacy.

2) You can use language to show that you truly see each other.  In addition to saying, "I love you," you can say, "You are beautiful to me," or "It makes me smile to see you smile."  Use words to convey that you are "home" to each other.  There is no script.  Don't assume that your partner knows what's in your heart.  Speak it out loud.

Of course there are not only loving sentiments in your heart.  You may be carrying anger, fear, and despair.  If you can, put those feelings in a separate compartment, temporarily.  Dig down to wherever you shelter your love and compassion for your partner.  Give voice to that.  There will be other times to discuss the hard stuff.

3)  Coping with the demands of illness can be exhausting and demanding -- both states are antithetical to relaxing and connecting.  Playing together can counterbalance that tension and can lead to emotional intimacy.  Partners can convert the mundane into a playful event.  Loading the dishwasher or cooking together or wandering the aisles of Costco can be a chore, or it can be a time of silliness and connection.  Imagine how children would behave if engaged in any of these activities.  The dishwasher is a puzzle to put together.  Cooking is mud play.  Wandering the aisles of Costco is finding Neverland.  Try not to focus on accomplishing, but rather on enjoying - the activity and each other.

One woman I interviewed for our book said that one of the biggest brain turn-ons she had occurred when her husband was in intensive care after having had open heart surgery.  She was laying on the couch in his hospital room suffering her own pain flares and trying to quell them with an ice pack.  She said to him, "I feel so useless.  I wish there were more I could do for you."  He responded, "Just having you here helps me breath easier."   She said that this was a truly intimate connection, even more intimate than some of their physical love-making.

For some people brain intimacy can be enough, or can be all their physical condition will permit.  For others, brain intimacy can be the runway for physical contact.  In future posts I hope to explore how couples can be physically intimate when illness prevents intercourse.

How do you and your partner "do" intimacy when illness interferes with physical love-making?  How do you use your brain to be intimate with your partner?

How Cancer Affects Your Relationship

From an article on ABC News:

How Cancer Affects Your Relationship by Casey Gueren

"Jennie Bushnell and her husband Dan had been together six years when she was diagnosed with Hodgkin's lymphoma. Since she was pregnant with their second child and they chose to delay treatment until after the baby was born, they didn't tell their families right away.

"We were each other's only confidant," says Jennie. "We were each other's only shoulder to lean on, because we didn't know what our future would be at that point."

From then on their bond got even stronger—through endless doctors appointments and six months of treatment.

According to new research, leaning on your partner during this time really can bring you closer. Among couples facing early-stage breast cancer, dealing with the illness as a team was associated with greater intimacy, according to a recent study in the Journal of Social and Personal Relationships.

From Illness to Intimacy

In this particular study, pairs who talked about how cancer was affecting them as a couple and truly listened to each other had greater intimacy at the follow up. That was also the case for Jennie and her husband who were spending even more time together than usual given all of her doctor's appointments. They talked about the cancer, practical things like insurance and wills, the new addition they planned to put on their house, and the vacations they wanted to take with their kids.

"It was a distraction, but I think we felt life if we thought long and hard enough about all the good things, they would just fall into place that way," says Jennie.

Aside from planning, they also retained their sense of normalcy—another factor that predicted intimacy in the study......"

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From Barbara:

In my experience, couples who have lousy communication patterns before the illness continue to have lousy communication after the illness.

UNLESS...

Unless they actively, consciously learn how to change their communication style to one in which there is greater listening, greater empathy, greater honesty, and less emphasis on only problem solving and at least a few less hours of TV watching (unless, of course, it's Showtime's Homeland).

But with attention and some guidance, couples can indeed become closer through illness than they were before illness entered their lives.

What has been your experience?

What Do You Do When Illness Makes Sex Impossible?

What do you do when your partner is no longer interested in or capable of sexual intimacy with you?

Illness takes many tolls, on both partners. One of them is too often sexual intimacy. Medications, pain, and exhaustion can not only turn a libido off, but it can also make intercourse painful for the ill partner. The well partner may be just too drained after a long day of caretaking, working, caring for the kids, and running the household to want anything more intimate than falling asleep side-by-side. And the shift illness produces in some partner relationship -- turning a bond of equals into one of caretaker - patient -- can make sex feel like a taboo.

For some couples, their sexual connection had always been a source of joy that filtered into the rest of the relationship, making it glow. For other couples, sex was routine and its effects remained in the bedroom. For others, sex was never a strong part of the connection.

Whatever your pre-illness sexual habits were, illness too often disturbs them. Intercourse may no longer be possible. Even touching can be problematic. Some couples whose sexual experiences were mainly physical, now find they actually have to talk about what feels good and what doesn't.

Through talking about sex, couples may find themselves entering surprisingly deeper levels of connection, and describing desires that before illness were invisible.

Some couples find ways of being intimate without intercourse. Some are able to stay connected without any form of physical intimacy. Some break apart. Some partners seek sex outside of the relationship, with or without the knowledge of their partner. (note: for the sake of safety and integrity, I would recommend that this be discussed between the partners).

I'm interested in hearing about your situation. Has your sexual relationship changed? How have you managed to deal with illness and physical intimacy?

How Do You Deal With Intimacy When You Hurt Too Much?

And not only when you hurt too much, but when you are tired all the time, and your meds dull your libido.

A sex therapist I interviewed for my book (to be released in Jan 2011) about couples and illness said that not all intimacy has to be: "Insert penis in vagina and shake." Intimacy at its core is about giving and receiving physical pleasure, ideally accompanied by emotional closeness. This latter recipe can be achieved in many ways. Sexual touching can happen anywhere on the body.

But sometimes the well partner may just want intercourse. What then? And sometimes the ill partner may want intercourse, but is physically unable to engage. What then?

The path to a resolution will be different for each couple. Each couple's sexuality and emotionality is unique to them. But the path to getting to some resolution requires open and honest communication. No matter how hard it is to talk about such intimate matters.

If, at the end of the day, you still want to stand, or sit, or lay together - you have to tell each other what feels good and what doesn't. And you have to talk about what you miss and what you want, and how you might get it, together. And what about giving each other permission to get what you need outside the relationship? is that OK?

If you don't talk to each other about your intimacy needs, they will not go away. They can turn into an invisible barrier that can erode your sense of closeness in other areas.

I think this is one of the most difficult terrains for couples to navigate. What have been your experiences of dealing with the intimacy side of living with illness in your relationship?

What Would You Miss About Illness?

I know this is an odd question. For many of us, our conditions don't necessarily disappear, but maybe they do fade in and out. Perhaps some of you (both the ill and the well partner) have luckily had the experience of being without symptoms long enough so that you can think of life as a journey and not just as an intermission between pain or fever spikes.

I had the good fortune of being in a symptom free phase for a few weeks and I started to notice that I was forgetting to do things like a sick person. I wasn't planning my days around the phases of pain. I bought tickets to a play three weeks ahead -- not out of hope that I would be ok, but out of forgetfulness to take my condition into consideration. Out of the irrelevance of pain.

One day, perhaps perversely, I starting reflecting on the question: "What do I miss about my pain condition?" I realized that I missed a kind of intimacy I had with Richard when pain was the major force in our relationship.

We see each other a lot more when I'm in pain, mostly because I don't really go anywhere. And we sit quietly, in the same room, not necessarily talking or reading -- just being. It's not that I want pain back so we can reclaim this kind of intimacy. I just want to remember to call on my consciousness to create this intimacy and not wait for pain to dictate the terms we engage on.

What does your illness do for you? What do you, or would you, miss about your illness should it fade for a week or two?